A Year of Constant Diarrhoea after Resection

Just over a year ago I had a second small bowel resection which was moderately extensive and also removed caecum, ileocaecal valve etc. I had an ileostomy afterwards which was reversed 4 months later. The trouble is that I have had persistent, watery diarrhoea ever since.

It was difficult putting weight back on at first, but things adapted and I have put the weight back on and now don't struggle to maintain weight if I eat normally. The problem is that I have to choose between eating and doing a normal day's work. If I can stay within 30 seconds of a toilet at home or in the office then I will eat, but if I am travelling any distance or out and about I then eating isn't a practical option.

There was issues with anaemia and B12 deficiency, both of which have been dealt with by ongoing iron supplements and B12 shots and I feel otherwise pretty well.

It's just this damn diarrhoea that can occur anything from 6-20 times a day depending on how much I eat. No matter what I eat, urgency is unpredictable and it is hard to stay hydrated.

I have prospectively tried Questran for bile malabsorption but it had no effect. My gastro is waiting for the results to a SeHCAT scan to see for sure whether bile is the cause. I had a fecal calprotectin test at Christmas which showed inflammation and my gastro thinks that this is the cause, but I'm not convinced. I only ever had occasional diarrhoea before the resection, but since the resection I have had nothing but.

It has been one year and one month since I last had a formed bowel movement and I'm becoming desperate to find a fix!

Has anyone else has had a similar experience and how did you deal with it?

thanks!

Alex

Hi Alex,

That must be really frustrating, I'm sorry you're having to deal with constant D

I realize you tried questran and in some many ways psyllium is similar, but give this thread a read and see if it sparks your curiosity.

I wish you well!

Have you tried Lomotil? You may also be experiencing Short Bowel Syndrome. Following a low residue/BRAT diet may help along with smaller and more frequent meals rather than 3 times per day and avoid fiber.

Another possibility - you don't mention how much water you actually drink. I have cut my water consumption by 50% because I had the same issue. Initially after my last surgery, water absorption was an issue and I needed to increase consumption to ensure I was getting enough. At some point it flipped and I didn't pick it up - it had become a habit. For me, less is more!

Thank you for your replies, much appreciated - gives me a few things to think about!

I suppose I really ought to wait until all the tests are back but you know how it is... start worrying that you might be stuck like this and hit the internet research!

In a way I hope it turns out to be bile related and not more active Crohns. The thought of more bowel being eaten away is not a nice one.

Not tried lomotil, not sure it is available in the UK? I have tried both loperamide and codeine. Both together do help to reduce frequency but all it does it delay the inevitable. The urgency still comes eventually and it's still liquid. I had to give up on the codeine because it makes you feel pretty drowsy and is apparently addictive.

I do drink at least 2 litres of fluids a day and have done since the ileostomy. If I don't then dehydration sets in. It's a bit of a viscous cycle really. Output does go down if I drink less but then end up dehydrated.

Well the results of the SeHCAT test are back... I retained only 2% (normal is >15%) so it looks like bile malabsorption is a significant factor!

I just wonder why the Questran didn't work before. My gastro has suggested I try Colesevelam as an alternative. Anyone tried this before?

Update to this... tried the Colesevelam and it had no effect. Still waiting on the results of an MRI and spent the last month trying to contact my gastro and failing.... God bless the NHS :tongue:

MRI showed possible active Crohns where my terminal illeum and caecum were removed... now waiting for colonoscopy

Hope it's not coming back again, apart from the diarrhoea I'm feeling pretty good...

I hope so too Good luck with the colonoscopy results!

I was trying to read through to see what meds you were taking. Were you not given any medication after the surgery for maintenance?

Hi Crabby, yes I was on Pred for a few months following surgery (slowly weening off) and have been on azathioprine continuously for the last 3 years

Any news on when your colonoscopy is?

Since it seems like the Crohn's might be coming back (or possibly wasn't all removed) and you were on Aza before the resection then perhaps you may need something else besides Aza.

Hi,

Reading this it is very similiar to my story so I just wanted to share really. I have crohns and have had 2 bowel resections. After the first everything went back normal, however scar tissue then closed my bowel and a second resection had to be done..to cut a long story short I was also put on questran which I took for a few years but always had D.

Started to try and control D myself with imodium as my job changed and the D started getting more urgent which isnt ideal when on the go at work and no juice to make up the questran with, but ended up losing the battle and having an accident which forced me to seek advice from the doc. A stool test has shown inflammation so he put me on budesonide which didnt help so now on pred (7 weeks in and still have D everyday) and waiting for a colonoscopy next week. My specialist spoke about using infleximab? which he thinks will help so now i'm hoping the colonoscopy results match the stool results so i can go onto this.

I understand how frustrating constant D is and hope you find an answer. My resection was almost 5 years ago and wish I had of pushed to get the D sorted a long time ago .. tempted to try a liquid diet starting in the morning as been reading great things about liquid diets on here.

Crabby said:

Any news on when your colonoscopy is?

Since it seems like the Crohn's might be coming back (or possibly wasn't all removed) and you were on Aza before the resection then perhaps you may need something else besides Aza.

Click to expand...

Hi Crabby, it's on the 24th. Gastro is talking about possibly Humira if they find active Crohns... if they don't find active crohns then I don't think they know what to do... so I don't know what I'm hoping for now!

cupcakeuk, five years is a long time to have to deal with it - I think I would have gone mad by then! I'm not sure how a liquid diet would help D, how does that work?

Apart from anything else liquid diets just become depressing IMO. When I was ill last year I was living off soup, ice cream, lucozade etc for months and even though I knew eating something solid would give me cramps and vomiting I would do it anyway because I craved that sausage roll in the office canteen so bad. Regretted it for a couple of days and swore not to do it again.... but another week of liquid only and I'd do it again! :ylol:

I've got to agree with you about the liquid diet, reviews say it can help to put you back into remission but despite all efforts I just love food too much! Bought in loads of soup etc and then went and ate pizza lol.. Probs why despite suffering with D for so long I'm still a little over weight..i know food will give me D or make me vomit but I still can't resist. I often have to starve during the day for work then have a feast when I get home.

I hope the colonoscopy goes well for you. I have mine tomorrow so just taken some of the prep drugs, I'm in for a fun afternoon! In a similar situation as you as part of me knows if it shows I still have inflammation or mild blockage it's not ideal but can be treated, but if it comes back as normal or only very slight active crohns the treatment options are limited and leaves my specialist in a bit of a puzzle as what to do with me..

I have had D forthe last 25 years,had three Bowel resections,apparantley I was told thatpartof my Terminal Ileium/caecum removed,once that happens there is nothing to control the Diarrhoea,I am fortunate that I only go about 2-3 times daily,unless I eat something or drink something that goes straights rough,but I was also told if I am only going a couple of times a day it does to matter what consistency it is.
By the way I have tried Lomotil,Questran,Loperamide and non made any difference,
Just be careful tho with this stuff,if you have a stricture like I have in the Terinal Ilieum
It can cause intestinal blockages which can be awful as well as dangerous.
Good luck

Hi, just wanted to update as had my colonoscopy today and they found active crohns at the start if my small intestine. They couldnt look any further so not sure how far it effects the small bowel but they could see the usual ulceration and inflammation. I don't really get pain and steriods haven't helped the D so really thought all the D was due to the removal of the part of the bowel that absorbs bile etc..maybe it's a bit of both but just wanted to give a little hope to you as they can now start me on the remicade treatment which could be an option for you if your results are similar once you have the colonoscopy done?

I've been tried on all the drugs but annoyingly don't respond well to any so far (the only times my flare ups have been controlled is through surgery) so I think this remicade is my last option

Anyhow good luck with it all and I hope you get the answers you want.

X

Hi cupcake,

Sorry to hear about your active crohns

Had my colonoscopy today and the preliminary results look like I'm in the same boat. Results say "stenosis and inflammation of the ileocolic anastomosis. Otherwise normal colon".

So basically inflammation where they chopped out the caecum/terminal ileum and the hole where the two ends were joined together is quite narrow.

They took a biopsy to be sure and I should be hearing from the gastro with the results in due course... Bit gutted about it but not totally surprised, chance of recurrence is what, 60-70%?...

Sorry to hear that it's back for you too. When I've looked on the diagram for mine it also looks like its the join where the crohns has returned to. Part of me is holding onto a positive as at least they can hopefully treat it now rather than dealing with an unknown reason for the D but reality has also hit in that there's probably going to be many more of these flare ups over the years.

How are you feeling about it all?

I'm reducing my pred quicker than my doc said to but for the simple fact that I've been on the steroids since June now and clearly by the colonoscopy and the D my suspicions were correct that its another drug that doesn't take the edge off the crohns for me. Plus my face l

Looks like the moon which is pretty rubbish! Reducing it by 5mg a week rather than fortnight so should be off them in the next couple of weeks

Hope you're doing okay x

You should check out the SCD Diet (Specific Carbohydrate Diet). I had resection surgery August 20th, my first surgery in 14yrs of Crohns Disease. About 8 months ago I came across the SCD diet because I had a fistula for 18 months and my quality of life physically was pretty morbid. Unfortunately I didn't discover the diet soon enough to avoid surgery I hope other folks will discover it early on. However, my fistual completely healed in less than a month and hasn't returned and I'm recovering wonderfully. I had multiple GI doctors and a surgeon tell me to prepare to live with the fistula for the rest of my life.

I urge you to undertake this diet, you should only be having one formed and painless bowel movement a day in the morning, and preferably before your shower. There shouldn't be any blood, or strenuous bathroom tendencies. Just make sure you follow the diet strictly and don't cheat. God bless hope you find some relief. Everyone with any form of IBS or someone who has a friend or family member needs to know about this stuff. It is truely groundbreaking to the IBS community. Make sure you google Elaine Gottschall read about her and look into the book. As well as googling SCD Diet A-Z so you can start correcting some foods before you purchase the book and start the diet 100%. Anyone can feel free to pm me if they have questions I'd be glad to share any knowledge I have on the subject toward changing your diet for the better. God bless.

I have got that book and it does to work for everyone,first thing has you have only just recently had surgery,like most people you start to feel much better after a couple of months,I know cause I have had three crohns ops,first one after having Crohns for 12 years,next one about 11 years after,last one 11 years ago,and now I am back again possibly looking at surgery in the next few months.
The reason is the SCD dietis all well and good,if you have not got strictures developed,Ihave tried this diet and sill ended up in A & E,with a small bowel partial blockage,the thingi have learned after having this illness for a long long time is Low residue,an if you do have a stricture any vegetable that does not go through a sieve-forget it.I sieve mine first,and then if not entirely happy put things through a Ricer as well,Stay clear of Red Meat -definately a no no.
Eat chicken,turkey and fish,especially salmon.
I also stay clear of salads,through experience,and juice most things and get the vitamins that way.
I have Diarrhoa all everyday,I only go to the toilet couple of times a day,but have had the part of the Ileium removed that absorbs the fluids,so have been told Diarrhoa is fine if I don't go more than three times a day.
I would love to agree with you regarding the SCD Diet,and am really pleased it is working for you,but just to let you know,people like me with strictures,it makes it very difficult.
Good luck and keep being well

Trish

cupcakeuk said:

Sorry to hear that it's back for you too. When I've looked on the diagram for mine it also looks like its the join where the crohns has returned to. Part of me is holding onto a positive as at least they can hopefully treat it now rather than dealing with an unknown reason for the D but reality has also hit in that there's probably going to be many more of these flare ups over the years.

How are you feeling about it all?

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The same really... if there is something there to treat then maybe the D can be got under control - that's the positive view. Not happy about the prospect of the Crohns being active still though, especially as it has so far always ended in being very ill followed by surgery and I am already missing 50% of the small bowel.

Will reserve judgement until I have seen my gastro I think... unfortunately that will probably be another month going by his usual turn around time.

Sadly I've got to agree. Still waiting for an appointment to see mine but finally came off the pred today the initial 8 weeks of steroids turned into just short of 5 months with no let up in symptoms..infact starting to get pain (only mild) on a daily basis now too so hoping that doesn't increase in intensity before I see him. Almost had an accident the other day at work due to my own stupid obsession with not being able to use bathrooms outside of my home (not the best when you have crohns!! Ha)

Hopefully soon we'll both be on the mend.. Keeping positive that this infusion drug will work for me once i start it as I don't want anymore surgery just yet!

Hope you're doing okay.

Another month goes by and still no gastro appointment. His secretary tells me the biopsy results are back but she won't tell me what they are, or what he intends to do next.

I have to wait for the letter to be typed. So frustrating. :thumbdown:

That's so frustrating.

Piranha I'm sorry you are still having d .. When I did my resection they gave me a very simple rule

Reduce sugery things and increase your salt intake

Drink Gatorade + salt it helps with the d and dehydration.